Bad news today, feeling sick and teary.

[BonApp]

My dad might be ill. I don't want to go into details but some further tests will reveal things properly in the coming weeks.

He was in tears when he told me today. I live abroad so we were chatting over Skype. I am going home in a few weeks thankfully so don't need to rush back, but I do feel bad for living elsewhere. And in fact I posted recently about this being one of my fears (parents health declining whilst I am in a different country). My sibling lives abroad too, much further than me.

My head is racing with thoughts of the short/medium/long-term. I know it's futile to speculate or worry until we know what we're dealing with but I've felt sick all day.

This is my dad. My hero. He's driven me up the wall as he's got older but I love him so much. We were supposed to be planning his 70th birthday celebrations but now nothing looks certain.

I knew the time would come when my parents would become elderly or experience poor-health but I'm not ready yet. And my dad isn't either.

Not sure why I'm posting really.

hotpink how are things with you? how's that lovely baby?
I agree about the grieving. I remember walking round Tesco with tears in my eyes thinking about dad. He was sat at home in his chair but I knew I was losing him. I was very anxious at that time. it's so hard⚘

I'm okay, quite tearful still though. Got their house to empty and sell, plus Mother's Day coming up. Last Mother's Day I could cuddle her and talk to her. The house thing is so hard. It looks like they've just walked out the house to the shops, Dad's glasses are next to his chair, the papers he was reading, his shopping list. I grew up in that house, it has so many memories in it.

Thank you both for thinking of me. Hope you are both ok.

hot mother’s day will be tough I’m sure, and how you even begin to broach the idea of clearing your family/childhood home, I don’t know. How is your little one doing (Poppy?). Big hugs to you and jools

I am heading back home for a few days soon. I think last week was tough for my dad and stepmum - another change in meds and the weather causing chaos made my poor stepmum feel overwhelmed bless her.

My brother and I had a good chat/cry together. This is very hard on him and I think he feels a bit lost with it all. Which I guess we all are.

I found the last trip home really hard, but I will be glad to see dad with my own eyes, though also nervous to see if there’s been a further marked deterioration. I think he’s very drowsy and tired. He’s having a hefty nerve block procedure at a hospital 3 hours away next week. They will stay with some friends who live close-ish to that hospital but I’m a bit worried that the journey and disruption will be too much.

I’m sure I’ve been grieving already. Which makes me feel so guilty to my dad. I also feel like he’s not really him anymore and we all talk around him and not really to him, h just sits there nodding off or not really able to keep up with conversation if he is awake And then I feel awful and disrespectful for saying this as I know he’s still there really. He’s still alive, he’s still a person, he’s still him really. I hate that his illness and the drugs are taking over. I’m not sure that makes much sense.

Work has been my escape, honestly being able to throw myself into that has been a godsend. My boss knows I may need to drop everything at any minute and continues to be very supportive.

@BonApp I did the same with work, I needed the distraction from constantly thinking about everything. I needed to keep busy, and work were brilliant, I could drop everything whenever I needed to. Poppy is doing well, she has my mum's smile, she's 7 weeks old now. I like to think my mum and dad are both up there somewhere, and have seen her. Sounds silly I guess. Sometimes I talk to them, I find myself doing it sometimes. It's strangely quite comforting. X

Hot she is adorable Your parents will live on through her for sure.

Are you coping ok with new mum stuff? I seem to recall you have other children but I know you found things tough during your pregnancy...

I don’t have a faith, but imagine some kind of place where people meet again and there is no stress or pain or anger or hurt. I suppose it’s like ‘heaven’ is depicted in films/books/stories - although without the religion aspects for me. I plan to still talk to my dad too.

Thank you! She keeps me busy, although i miss the distraction of being at
work, but it's nice to have time out just to rest and be with her. How are you feeling? Are you coping okay? X

Good to hear!

I’m ok I think, thank you. I cry with DH and family. I find it very hard to talk to friends about it but I’m not sure why really. Maybe because I know they want to help, and it’s a totally helpless situation. It’s all a bit bleak and heavy and I feel it’s futile to “dump” it on them. Plus sympathy and kindness tend to make me cry so I try to avoid conversations where those two things might pop up!

hotpink poppy is so cute! I can't get over those huge eyes, beautiful!
That's so hard having to clear the house, where do you begin to start! You must remember tho that you will always have fond memories, and your parents live on in Poppy.
I chat to my dad and still send him txts telling him I love him. It helps a tiny bit.
Bonapp I hope the trip home isn't too stressful, I'm sure your dad will love seeing you.
I also got/get emotional if people showed sympathy I bumped into a colleague at the hospital the day before dad died and I blubbed all over the poor girl!

Take care everyone⚘

hotpink thinking of you today

Hotpink 🌷thinking about you and everyone else who is missing their mum today.

Dad had a cordotomy today (procedure where they burn off nerves in the spinal cord to kill the nerves and therefore pain) and so far so good, it seems to have worked and dad doesn’t feel much pain now. I’m so relieved and so pleased. He may lose some sensation but the general consensus is that is a small price to pay.

Hopefully the drugs can be cut back so he’s not so dopey and gets his appetite back too.

I really hope this makes a big positive impact on his last weeks/months. I’m under no illusions that the pain will be gone forever but it’s a small improvement that’s for sure.

Bonapp that sounds really positive, I've not heard of that procedure, sounds like a big operation. But how brilliant if it stops his pain and gives him an appetite. I really hope it brings him, and you some relief🌷

There’s only a few places in the country that do it. It’s mainly used for meso patients. They did it under local anesthetic as dad had to tell them where he could feel stuff.

It feels so positive, but then I remember it will still get worse...

just live for today Bonapp
it may give your dad a second wind if he's not in so much pain. Pain can be so debilitating, I'm sure it will bring him some relief.
Strangely my dad had very little pain, I'm not sure why I guess it affects people differently.Dads worst symptom was an extremely dry mouth (& not able to eat) and fatigue.

You are right jools, it is good.

The nerve pain started after the pleurodesis (talc procedure and fluid drain) and it seems that this type of mesothelioma causes cancer to cling to nerves. Dad also has a very dry mouth which puts him off eating, but we are putting that, and the drowsiness, down to the drugs more than anything. But time will tell I guess.

Dad was warned about pain after the pleurodesis but they couldnt complete his procedure. He had the chest drain but they couldnt put the talc in as his lungs were, in the surgeons words 'a right mess' They were too stuck together to do anything
maybe that's why he don't have so much pain. who knows.......

I don’t think my dad was warned so felt very deflated when the pain started as he expected that to ease his breathing and make him feel better. Instead it’s been the start of horrid nerve pain.

I guess they weigh up the cause/effect of each method.
i.e this may help you breathe more easily but may cause pain.
Or, This will ease your pain but make you really sick.
Crap choices to make tbh!
The day after dad had his chest drain in and loads of fluid came off he was able to walk for ages with no breathlessness. walked up 2 flights of hospital stairs no problem!
we got very excited thinking he was 'cured' for a while.
Next day his lung filled with fluid and it was downhill from then onwards But you do cling to every scrap of 'good'
It's an emotional rollercoaster for all concerned. ⚘

I feel totally overwhelmed today. I’ve got the flu and it’s my birthday. I keep thinking if I feel like shit imagine how dad must be feeling. I feel like I’ve let DH and the kids down by not being a bit jollier today, I haven’t been able to enjoy the lovely weather and everyone and everything is annoying me. I am sad, heartbroken, over-sensitive, complacent, fed up, uninterested, angry, frustrated all in one.

DH printed a lovely photo of dad and me, about 7 years ago. He looks well, I look relaxed and we are both really smiling.

We are so far away from that now

I’m a snotty overweight blubbering mess and dad is an ailing, shuffling, terminally ill patient.

I want to crawl into bed and not be daughter, mother, wife, sister and all that comes with that. Which is totally selfish and unrealistic as I’m needed in those roles.

aww Bonapp you are not any of the above! all this stress catches up eventually, it's bound too.
I think you are beginning to grieve for your dad. Looking back I did a lot of that without really realising..... walking round Tesco with tears in my eyes, crying when I had a moment to myself, waiting to crawl into bed and never come out. it's all perfectly normal behaviour of someone grieving.
it just happens that you feel ill on top of all that, and it's your birthday!
You are probably wondering, just like I did, what you will be doing on your next birthday.
we can't help thinking like that, it's in our makeup.
How lovely if your DH to give you that photo, totally heart breaking but lovely☺
There are no words to make it better, we both know what's to come, but you don't know when!! so try and live daily and take each moment, good or bad, and embrace it.

And can i tentatively wish you a happy birthday?🙄🍷

It just feels a bit too heavy today. I know feeling rubbish isn’t helping but I can’t stop crying.

My dad had forgotten it was my birthday. Which really doesn’t matter in the great scheme of things but I sent a nice text showing him the photo DH had got and he hadn’t seen it and was so out of it / still in pain from the procedure he could barely talk.

My “so far so good” unthread was a little optimistic I think. Turns out dad’s got mirror pain now (pain on the opposite side to the original pain, as a result of the cordotomy), plus is weak in the legs on one side. Both of which can happen in several cases then wear off after a few days... fingers crossed, but I weep at the image of my stepmum having to call the neighbour over to help get dad out of the car and into the house.

Hopefully this procedure will make a difference and the benefits will be felt in the coming days.

I’m sorry if this blow by blow account is tmi and upsets anyone, but it’s ever so helpful to be able to offload here.

Bonapp offload as much as you want, I know how much it helps.
I may not always have the right words to say but I always read your threads. I know what you're going through

Dad’s really struggled today apparently. The gp and palliative nurse were round and are going to have a meeting to discuss what happens next.

They had to travel 3-4 hours each way for the cordotomy and I think it’s all been too much.

My poor poor dad I love him so much.